Patients come to Behavioral Research and Treatment Center (BRTC) at MD Anderson to use initial version of My Family Garden website. Completion of Website Analysis and MeasureMent Inventory (WAMMI), and demographics questionnaires.

demographic questionnaire
Surveys

Complete questions about demographics (age, race, marital status) and medical history. This visit should take about 1 hour to complete.

audiotaped interview

Group 2: Patients provide feedback regarding initial version of My Family Garden website.
Group 3: Patients provide feedback regarding final version of My Family Garden website.

wammi inventory

Patients complete Website Analysis and MeasureMent Inventory. This visit should take about 90 minutes to complete.

Patients use final version of My Family Garden website, and are interviewed which will be audiotaped. Completion of Website Analysis and MeasureMent Inventory (WAMMI), questionnaire and demographics questionnaire.

demographic questionnaire
Surveys

Complete questions about demographics (age, race, marital status) and medical history. This visit should take about 1 hour to complete.

audiotaped interview

Group 2: Patients provide feedback regarding initial version of My Family Garden website.
Group 3: Patients provide feedback regarding final version of My Family Garden website.

wammi inventory

Patients complete Website Analysis and MeasureMent Inventory. This visit should take about 90 minutes to complete.

Primary Outcomes

Measure

Evaluation of Internet-Based Program Among Lynch Syndrome Family Members

time frame:
1 day

Eligibility Criteria

Male or female participants at least 18 years old.

Inclusion Criteria:
1. At least 18 years of age
2. Able to read and speak english
3. Completion of genetic counseling and testing for a Lynch syndrome mutation
4. Persons with positive (i.e., carrier of Lynch syndrome MMR mutation) as well as
indeterminate test results
Exclusion Criteria:
1) None

Additional Information

Official title

A Social Media Approach to Improve Genetic Risk Communication Phase I

Principal investigator

Susan Peterson, PHD,MPH

Description

If you agree to take part in this study, you will be assigned to 1 of 3 groups based on when
you joined the study.
Group 1:
If you are assigned to Group 1, you will take part in a focus group where you will be asked
what you would want in a web-based program designed to improve the communication of health
and health history information among family members affected by Lynch syndrome. You will
also fill out a questionnaire with questions about your demographics (age, race, marital
status) and your medical history. This visit should take about 1 hour to complete.
Group 2:
If you are assigned to Group 2, you will come to the Behavioral Research and Treatment
Center (BRTC) at MD Anderson to use the initial version of the My Family Garden website. My
Family Garden is designed to teach new ways of communicating about Lynch Syndrome and about
other issues related to the disease (such as risks associated with the disease, etc.). You
will be instructed on how to use the program by the study staff. After you use the website,
you will have an interview where you will provide feedback on your session. You will be
asked questions about your feelings about the website and about any possible improvements
that could be made to the website. You will also fill out a questionnaire called the Website
Analysis and MeasureMent Inventory (WAMMI) which is designed help rate websites. You will
also fill out the demographics questionnaire described above.
You will be given the option of completing the WAMMI and demographics questionnaire at the
BRTC after your session or at your home. If you choose to complete them at home, you will be
provided with a self-addressed, postage-paid envelope so you can mail the questionnaires
back to the study staff.
This visit should take about 90 minutes to complete.
Group 3:
If you are assigned to Group 3, you will use the final version of the My Family Garden
website. This final version will include changes from the web designers after feedback has
been given from the previous groups in this study.
After you use the website, you will have an interview where you will provide feedback on
your session. You will be asked questions about your feelings about the website and about
any possible improvements that could be made to the website. You will also fill out the
WAMMI questionnaire and demographics questionnaire described above.
You will be given the option of coming to the BRTC at MD Anderson to use the My Family
Garden computer program or using the program from your home. If you choose to use My Family
Garden from your home, you will be given a secure, password-protected hyperlink via e-mail
to access the program. You will be instructed on how to use the program by the study staff
either in person or over the phone. If you use the program from your home, the study staff
will give the interview over the phone. If you complete the questionnaire at your home, you
will be provided with a self-addressed, postage-paid envelope so you can mail it back to the
study staff.
Whether it is completed at MD Anderson or at home, this visit should last about 90 minutes.
Audiotapes:
All focus groups and interviews will be audiotaped. The audiotapes collected during the
course of this study will be stored in locked file cabinets in a locked office and will be
destroyed after 5 years.
Length of Study Participation:
Your participation in this study will be over after you have completed the study procedures
described above.
This is an investigational study.
Up to 49 participants will be enrolled in this study. All participants will be enrolled at
MD Anderson.

Trial information was received from ClinicalTrials.gov and was last updated in November 2016.